Lady Gaga has a documentary coming out on Netflix this month which features her battle with chronic illness. This week she announced that she has fibromyalgia.

When I hear of anybody with fibromyalgia, I feel for them. As somebody who experiences the pain and hardships on a daily basis I can empathise how bad their battles may be. Fibromyalgia can affect everybody differently, and can affect your life differently from a day to day basis. This makes it hard to treat, hard to manage.

I am interested in watching the documentary being released later this month. I think it will be interesting to see how fibromyalgia is portrayed on the film. I recently watched a television programme that had fibromyalgia featured and I do not think it was featured well. It started off well but did not show the multiple battles, or different treatment types that may work. It made treatment seem like a “one size fits all” idea, and that is definitely not the case. It would be great if there was a treatment out there that would definitely work for everybody however that is not the case.

Lady Gaga works hard for her performances. She does a lot of singing and dancing. I worry that people will see that she has fibromyalgia and still performs so could potentially alienate people who suffer from it. I know for a fact that there is no way that I could put on a show like Lady Gaga! I can’t even go shopping for twenty minutes without crying. I can’t even shower without having a lie down afterwards. Already, I get told things like ‘[insert name here] has fibromyalgia and they can [insert activity here].’ I can already hear Lady Gaga being used as a potential example – “Lady Gaga has fibromyalgia and she can still work/perform.” It can be hard for people to see how debilitating fibromyalgia can be, especially when it is an invisible illness. Also, Lady Gaga will have access to different, and potentially more, treatments to try.

That being said, a famous person speaking out about fibromyalgia will definitely spread awareness. Her announcement has started so many conversations and that is very important. It has put fibromyalgia in the spotlight and shared information about it to people who may not have heard of it. For some people, it has brought about hope. It is a reminder that they are not alone in their battles.

Fibromyalgia does not discriminate, it affects people from all walks of life.

Today I attended a beautiful remembrance service arranged by Accord Hospice. Accord Hospice is a hospice in my home town, Paisley. Accord’s purpose is to provide compassionate, palliative and end of life care to people. They strive to then continue to comfort loved ones through the bereavement process and remembrance. They “…seek to optimise all that brings meaning, comfort and hope, ensuring that we value and celebrate life in all its diversity” (part of the Accord mission).

Every year the hospice puts on a service of remembering in honour of the people who have passed away and their families. Each year is a different theme. Today the theme was petals. The hospice had sent a petal shape out to my papa and the idea was to write the name or a memory or a message of remembrance for the loved one you have lost. Petals were provided at the back of the hall for anybody who wanted to write their own message. If you look at the picture below, all the different colours on the stage are all the ‘petals’ with all the messages of remembrance. It felt like such an intimate moment when people went to lay their petal.The service was a chance for people to come together to remember loved ones through song, music, poems, prayers, memories and love.

At one point of the service petals fell over us all. Realistically, this was people up the stairs, walking along throwing petals over everybody but it was a beautiful moment. It was like receiving your own message, or sign, from your loved one.

The theme of nature is particularly important to me. There is a tree near the family plot in the cemetery. It is a beautiful tree, full of blossoms.On the day that we buried my nana’s ashes, as my papa and my uncle lowered the casket, I got tapped on the head by a branch from the tree and petals fell off. I took this to be a comforting pat on the head off my nana. Another important part of the service was when “On Eagles Wings” was sung. This was a hymn that we picked for my nana’s funeral.

On the 20th of May my papa, my aunt and uncle, my sister and I stayed overnight at the hospice to be with my nana. The staff at the hospice were fantastic! Not only did the provide the best care to my nana but they also looked after all of us. At 7am of the 21st (of May) we were altogether with my nana as she passed away. This service was very important. It was a chance for me to think about my nana, to think about time spent together, to think about her. Around 5am on the morning my nana passed away I was in the room with her, holding her hand and “Con te partiro” came on. At the time, I was so emotional that I started to cry even heavier. I was so annoyed by it. Calming music was being played to try and block out the sound of the nebuliser, and to help keep the atmosphere calm to help us and my nana. “Con te partiro” is translated to “Time to say Goodbye.” Now, in hindsight, I think it was an important time to have. Many different pieces of music was played that night and I cannot remember any of them other than ‘Time to say Goodbye.’ This is such a poignant memory for me, and it is one that is going to stay with me for life. I thought about how cheeky my nana was. She was so funny, and the faces she pulled. I thought about all the outings we had, the arguments we had, the cries we had, the laughs we had.My nana passing away was one of the most difficult time of my life and having a time and space to reflect upon everything, i feel, has been beneficial for me.

I have written about my nana before. She was such an inspiration. She made such an impact on people when meeting her. Everybody comments on the loss that they feel without her here. She was loving, strong, determined, loyal, stubborn and she fought a brave battle. If I can become half as charismatic, present and loving person as my nana was, I will have succeeded in life.

On a completely different note, today marks the start of Fibromyalgia Awareness week. Later on during the week I think I may add another blog, about fibromyalgia. If anybody has any questions about life with fibromyalgia, please feel free to ask. I may not have all the answers but I am happy to speak about my own experiences.

So I’ve been wanting to write about both We Band of Others and Ambivist for some time… Then something exciting happened and I got invited to a local recording studio where the Ambivist guys played and modelled We Band of Others clothing. It was a great day!

We Band of Others

We Band of Others is an independent clothing brand that is based in Glasgow. They get inspiration for their designs from music. They have “..created this brand for the “Oddballs of Society”, for anyone who feels like they don’t fit in or feel cast out from society for not following the norms and daring to be different.” They strive to empower people to be themselves, embrace their differences, believe in themselves and reach for their dreams.

I cannot stress enough how important something like this is! People are ‘cast out’ of society for the slightest difference all the time. Bullying occurs in schools as people’s differences are pointed out. Labels are often given to people for being different – geek, freak, weirdo and there are loads more. In a world full of peer pressure and ‘following’ people, somehow standing out has became a bad thing. Empowering people, saying it is ok to be yourself, saying that you matter – these are all important values. Monday is ‘Motivation Monday.’ Who doesn’t need a bit of motivation, especially on a Monday? On top of that, they are reminding people that they are not alone and have created a wee community. Scrolling through their instagram feed you come across many pictures of people showing off their purchases, saying why it’s important to them, saying “yes I am an Oddball of Society, and I am proud to be one!” In fact, if you scroll through their instagram you come across the picture above of me doing just that!

When I went onto the We Band of Others’ website I fell in love with their tee shirts, and I could not decide which one to buy, so I purchased two. I wear these tees a lot! They are soft and so comfortable. I mean, a comfy tee with an inspiring or empowering message, can you go wrong wearing that? I think not! Also, you get free badges and stickers with every order! How fun is that? Plus, they’re free. Everybody loves a wee freebie! Details on how to check out this amazing brand are below! You never know, you could make a purchase and take your own selfie standing proud to be an Oddball of Society and be featured on their site.

Ambivist are a progressive rock band from the Ayrshire in Scotland. The band consists of four band members – Sean (guitarist/vocalist), Michael (drums), Paul (bass) and Ross (guitarist).

I managed to get myself to a gig one night that I knew Ambivist were playing despite being in a lot of pain, and boy was I glad I managed to catch them! Unfortunately I was not able to stay the whole gig that night but I saw the whole Ambivist set. They were brilliant! The four guys sync to produce the most wonderful sound. Sean, has a great voice. It has a really nice tone, which is quite deep and has a touch of that fantastic quality that I like to call a ‘gravelly voice’. On top of that he produces sounds that are smooth, and can evoke emotions. I felt their performance! The music, the lyrics, their performance just spoke to me. It made me feel, a lot. It made a girl who had been crying about the amount of pain she was in and was finding moving at all very difficult forget the pain for a short while and just feel the power of the music. That kind of experience is priceless.

I have included the social media details of this amazing band below so that you can check them out!

So as I said at the start, something very exciting happened, I was invited to shadow the team at We Band of Others and attended a band practice of Ambivist, turn photography shoot. The whole experience was great!

We Band of Others attended a gig in their local area that Ambivist were performing at. We Band of Others enjoyed the band and their performance and took to their Instagram account and shared a picture of the band performing. This started a dialogue between the musicians and the clothing brand.

Speaking to the photographer, I found out that the vision behind the shoot was to have the band model the tees, including their new summer merchandise which included a snap back hat, while the guys performed/practice. The photographer explained that she felt that if she asked the band members to pose with their instruments then the pictures would develop looking forced. The very essence of We Band of Others is for people to embrace their differences and their quirks and believe in themselves and just to be yourself. The idea was that if the band were just doing their thing, doing what they love, just being themselves then the pictures would look natural.

We all met at a local recording studio and I got to meet all the band members. After some chat everybody went to set up. The photographer set up her camera and the band set up the equipment, plugging everything in and doing sound checks. I also got a pedal board explained to me. I am not going to even pretend I know what each setting did but Sean explained some of the pedals to us. Listening to him talk and do wee demonstrations to show what he meant was fascinating. I have always loved music. I have even performed music, many times when I was younger. I have never before had an insight to a pedal board and what each pedal did. This has given me a new appreciation for musicians. They get up on that stage, in front of however many people, they have those burning lights on them, they might even have effects such as dry ice about, they have lots of wires surrounding them and still manage to perform. Even while having songs needing certain switches set to on or off. It is just astounding.

Another insight I got to see was the photographer setting up her camera. Again, like the pedal board I am not going to even attempt knowing anything that she was doing. My photography skills go as far as turning the camera on, trying to get my body to hold still, press the capture button and hope for the best. Never have I changed brightness levels and focuses and all sorts of different settings. It was interesting to see and it is a skill that I wish I possessed, however it is not my forte.

I was made to feel very welcome in that room, I felt like I was just one of the gang. The band and the clothing brand team gave me permission to take photos too, which was exciting. It was so cool seeing the band all wearing We Band of Others tees and have buttons and stickers on their guitars, guitar straps and even on the drummer’s cymbal!

The band asked the photographer what she would like them to do, she told them that they could play and she would take pictures through it. This was such a funny moment, that will stick with me for a long time. The photographer said “play whatever you want” and the Ross started playing Mary Had A Little Lamb. After that everything went really smoothly. The band did their job and the photographer did hers. What was really great, was you could tell that each person in that room loved doing what they were doing. The band were having a “jam session” and rehearsed songs, parts of songs or just had a bit of fun. This was a great experience, it was an intimate insight to a rehearsal. I ended up treating it a bit like a private performance though.The photographer snapped all of this. She had sent me a few photos as a sneak peaks and they look great. I have no doubt that the rest of the pictures will look just as great. Some pictures are now live and featured on the We Band of Others website.

In all of the goodness, of course I had my struggles. I was meeting people I didn’t really know which is something that causes my anxiety to rise. The flashing of the camera and the loudness of the playing through the amps and microphones, and the drum set did send me into a sort of sensory overload daze for a bit. Symptoms of Fibromyalgia and anxiety can be triggered or made worse by situations and the environment that you are in. That being said, I really enjoyed the experience and for some amount of time, I was able to stay in control of my body. I was able to feel the buzz of being honoured in being present at a band practice and wee photo shoot. I have so much admiration and respect for everybody who was in that room and they were all super talented individuals.

All photos included were taken by myself and as I said, it’s not my forte, I just love taking pictures. This sure was an awesome experience and I would like to thank We Band of Others, and the guys of Ambivist for inviting me to come along!

Hearing reports on Thursday 20th about Chester Bennington’s death by suicide at the age of 41 shocked and upset me.

The date of his death looks to be significant as it is the date that his friend Chris Cornell’s (who died by suicide himself 2 months ago) birthday. Birthdays, anniversaries, holidays can be very difficult for people. That date can magnify that your loved one is no longer with here, and their loss can be really felt. Losing a loved one can be a trigger for mental health issues. The overwhelming variety of emotions that attack you, the grief and realisation that loved one is not with us anymore are all hard to deal with. This can lead to feelings of self harm or suicidal thoughts/ attempts.

It is a tragedy when any loss of life is due to suicide. There seems to be something more terrifying about it when it is somebody you admire, you look up to. It is especially sad when that person and their art helps you through dark times and feelings in your own life.

Death by suicide always raises a lot of questions, with people wondering how he could do it and think about how he “had it all”, they think “what about his … [children, wife, family, friends, band, fans]?”, “why did this happen?” The hard thing is, there will be no answers for the ones searching for them. Even if their is a note or some kind of message nobody is going to really have any answers.

Linkin Park, and their music are often said to have ‘saved lives’. Their powerful music and lyrics have impacted many people’s lives.The music reminded people that they are not alone in their battles with their demons. It provides a safe outlet to scream out frustrations, emotions, repressed feelings. Lyrics of songs and music can be so important. Lyrics can give feelings and experiences words, especially when you cannot put words to these yourself. Pain and hope were often themes through Linkin Park’s music. That’s important to people. There are Linkin Park songs that resonate with me. Linkin Park music is part of my own journey and I, like all fans, can feel this loss of a man whose words and emotions through music impacted on life. The title I’ve picked is from “Numb” which is a song that has helped me through some times. The phrases “…all I want to do // is be more like me and be less like you” and “every step that I take is another mistake to you” felt like they were describing me. I remember listening to “Numb” and thinking that this song was exactly like me and my life. It had a huge impact on me. I just don’t have the right words to describe just how much they did.

Tributes can be found all over for Chester Bennington. I really hope that his family can take some comfort from the fact that he has helped so many people through their own mental health journeys and that his music and songs will continue to be there through tough times. I hope Chester is at peace now, I hope he knows the impact he has had on so many lives. I am sorry that he didn’t have help at a time that he was so vulnerable.

For everybody grieving the passing of Chester Bennington. For everybody grieving the passing of a loved one (whether it was suicide or not). For everybody suffering from depression, anxiety or any other mental health condition, chronic illness, disability (invisible and visible). For everybody with thoughts of self harm or suicide. There are a few things I want to say to you:

It is ok to feel. It is ok to have many different emotions going on. It is ok to not know how you feel, you can’t give it a ‘label’ you just feel..

You are not alone. Other people may not know exactly how you feel, or what you are experiencing, but people can relate.

There are people out there who can help. There are people out there who want to help you! It is ok to reach out for help. It is not being weak asking for help. It is easy to feel that the whole world is against you, but it’s not. There will be help available somewhere.

Be kind to one another. You don’t know the battles that some people are facing. It is not always apparent that somebody is struggling.

Above all know that you matter! Your life, your story, your journey… You!! It all matters. YOU matter!!

If you, or anybody you know, are requiring help and support then there are multiple companies you can call, or get in contact with.

You can call the Samaritans any time, for free from the UK on 116 123.

For any readers not from the UK, the To Write Love on her Arms website has quite a useful list under their “Find Help” Section. Do check it out, quite a lot of places are covered. https://twloha.com/find-help/local-resources/